Lessons from a qualitative review of parental experiences of a paediatric renal service

Carly Smith, Cara Davis, Catherine Randle-Phillips, Susannah Gibb

Research output: Contribution to journalArticle

Abstract

Background
Infants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.
Aim
To explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.
Method
Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth.
Findings
Four main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness.
Conclusions
Incorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.
Original languageEnglish
JournalJournal of Kidney Care
Publication statusPublished - 20 Nov 2018

Fingerprint

Pediatrics
Kidney
Parents
Renal Insufficiency
Guidelines
Renal Replacement Therapy
Quality of Health Care
Child Development
Kidney Transplantation
Dialysis
Communication
Parturition
Interviews
Therapeutics

Keywords

  • Infant, Parent, Care pathway, Partnership, Kidney disease, Chronic conditions

Cite this

Lessons from a qualitative review of parental experiences of a paediatric renal service. / Smith, Carly; Davis, Cara; Randle-Phillips, Catherine; Gibb, Susannah.

In: Journal of Kidney Care , 20.11.2018.

Research output: Contribution to journalArticle

@article{bd488b31be2d48929114e7874ffe2663,
title = "Lessons from a qualitative review of parental experiences of a paediatric renal service",
abstract = "BackgroundInfants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.AimTo explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.Method Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth. FindingsFour main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness. ConclusionsIncorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.",
keywords = "Infant, Parent, Care pathway, Partnership, Kidney disease, Chronic conditions",
author = "Carly Smith and Cara Davis and Catherine Randle-Phillips and Susannah Gibb",
year = "2018",
month = "11",
day = "20",
language = "English",
journal = "Journal of Kidney Care",
issn = "2397-9534",
publisher = "MA Healthcare Ltd",

}

TY - JOUR

T1 - Lessons from a qualitative review of parental experiences of a paediatric renal service

AU - Smith, Carly

AU - Davis, Cara

AU - Randle-Phillips, Catherine

AU - Gibb, Susannah

PY - 2018/11/20

Y1 - 2018/11/20

N2 - BackgroundInfants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.AimTo explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.Method Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth. FindingsFour main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness. ConclusionsIncorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.

AB - BackgroundInfants and young children with established renal failure (ERF) require extensive treatment, including dialysis and kidney transplantation, putting huge practical and emotional demands on families and staff. The specific needs for support of families with infants requiring renal replacement therapy starting in the first few weeks and months of life are not well described in care guidelines.AimTo explore the care pathway experiences of parents of infants and toddlers with ERF being seen within one UK specialist paediatric renal unit, and to make recommendations for how to improve family experience.Method Semi-structured interviews were carried out with ten parents of six toddlers who had been receiving specialist renal treatment from birth. FindingsFour main themes described parents’ experiences: Parents’ Emotional Journey; Practical Feedback to the Service; Communication; and Staff Interpersonal Effectiveness. ConclusionsIncorporating recommendations based on families’ views into care pathways that meet the individual needs of families (framed by medical guidelines and models of helping) can help to improve parental experience of services. This will help alleviate parental distress, foster secure attachment relationships and encourage positive cognitive and emotional child development at a critical time. Routine monitoring of implementation and outcome of such a care pathway is essential to ensure ongoing improvement and quality of care.

KW - Infant, Parent, Care pathway, Partnership, Kidney disease, Chronic conditions

M3 - Article

JO - Journal of Kidney Care

JF - Journal of Kidney Care

SN - 2397-9534

ER -